Consumer Involvement
National Black Family Cancer Awareness Week, June 15-21, 2023
Black individuals experience higher death rates for many cancers, compared to all other racial and ethnic groups.1 Racial and ethnic minority groups are also historically underrepresented in clinical research, meaning research results may not reflect how these groups respond to medical interventions or experience different diseases. Each year, Black Family Cancer Awareness Week brings attention to these health care disparities. The Congressionally Directed Medical Research Programs (CDMRP) requires all applicants proposing clinical research to provide the composition of the proposed study population in terms of racial and ethnic categories as well as sex/gender, and to describe the rationale for selection of the study participants. CDMRP and the Rare Cancers Research Program (RCRP) are committed to supporting equity in clinical research and funding awards that include a strategy for inclusion of underrepresented populations.
Story of Trena Brown: An Advocate for Rare Melanomas in People of Color
Skin cancer can affect people of all skin tones. However, there is a misconception that it does not affect people of color, which contributes to delayed diagnoses of the disease.2 This is a topic that acral melanoma survivor Trena Brown is passionate about – because she, too, never thought she was at risk.
Trena’s acral melanoma was diagnosed merely from a blister, which was a shock to her. Acral melanoma can form on different areas, such as on palms, the soles of feet, or under fingernails or toenails. People of color are often unaware of their risk for this rare subtype, and, unfortunately, acral melanoma may be misdiagnosed or found too late. The dreadful consequence of the late diagnosis is lower chance for overall survival.
Trena has gone through toe amputation upon the diagnosis of her acral melanoma. After the surgical procedure, and a six-month period of observation, there was no sign of malignancy, and Trena returned to her “normal” world. She started enjoying her retirement and fun activities, such as aerobic classes.
Two years post-surgery, however, she began to experience labored breathing. Chest X-rays, followed by computed tomography scans and lung biopsies, led to devastating news: melanoma had metastasized to her lungs. Trena started fighting against the disease with full vigor, and a series of immunotherapies resulted in reduced tumors and lymph nodes that had reduced to normal. After almost two years of fighting against the deadly disease, Trena came out triumphant, as the tiny lung tumor disappeared.
“We are bombarded with ads in the spring and summer about sunscreen protection from melanoma, and being Black and brown, ignorance will continue to let us think we cannot be affected by this deadly disease,” Trena says. “As you know, discovery is often late and fatal.”
Trena was invited to serve as a consumer peer reviewer for the Rare Cancers Research Program in fiscal year 2022. She was interested in anything and everything that could promote melanoma educational awareness, particularly for people of color.
According to Trena, her experience with the Congressionally Directed Medical Research Programs’ review process has been positive. Although she said the review was daunting at first, because of her non-scientific background, Trena also added that “I was happy to receive positive feedback on my comments and respect from the scientific members of the panel”. Trena hopes one day she will review a proposal that can identify the cause for acral melanoma.
After retiring from a corporate life, Trena is currently engaged in jewelry making, but, mostly, she said that she enjoys life by getting together with friends, listening to audio books, and watching movies. She will also continue to advocate for the rare melanoma community.
(The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision)
References:
1National Cancer Institute. Cancer Disparities. Accessed May 2, 2023. https://www.cancer.gov/about-cancer/understanding/disparities Epub 2021 Jan 12. Erratum in: CA: A Cancer Journal for Clinicians 2021 Jul;71(4):359. PMID: 33433946.
2Gui J, Guo Z, and Wu D. 2022. Clinical features, molecular pathology, and immune microenvironmental characteristics of acral melanoma. Journal of Translational Medicine 20(1):367.
Last updated Tuesday, June 20, 2023